I hope I have the strength
 

About a year ago, I started having some tingling in my left foot. My doc tested for diabetes in the spring and it came up negative. It got worse over the summer, then a week ago, horrible. Having trouble with sleep and just functioning. I see my doc again tomorrow.

In '98, I was a clerk in the post office. I had severe pain in my neck and arms and eventually, I couldn't lift my arms at all anymore. I had shoulder surgery, which failed to help. Then the neck went. Double discectomy - ended up disabled in 2001. The experience left me with PTSD - flashbacks to pain, pain, pain.

It took 7 years and 3 trips to psych wards for the physical and mental pain to die down. Suicide was often on my mind.

Now it looks as if I have to face this new enemy. I have read through many of the posts on this forum regarding diet, exercise and supplement regimens. I guess it is possible to improve things, but I can't stop crying. I'm trying to pump myself up to keep on but I find myself just wishing it was all over.

Hang in there
 

Hi, and welcome.

As a recent member of this forum, and as someone who has gone through a pretty traumatic few weeks, indeed, my whole world has collapsed from where it was just a short while ago. The fact that you have made it this far, over several years, shows what strength you have. I'm sure everyone here has shed tears over their pain and felt the feelings of hopelessness - I know I have. But you will find strength here, and you should find more relief than trying to battle on your own. I would not myself attempt to offer you technical advice as this is all new to me also, but the people here are very knowledgeable and are only too willing to help point you in the right direction. My advice would be, break each of your problems down further, be more specific. What testing have you had done? What kind of pain/tingling/numbness? is it constant? What exactly are your disabilities? and what medications are you taking now, or have you taken in the past. Which specialists have you consulted with and what were their opinions?
For the true experts here to have a clear idea of how to help you, they'll need to know all of that, and probably more. All I can say is, hang in there you're not alone.

Swmnupstrm,
Have you been treated, tested, & seen at a facility
that has neurologists that are specialists
in neurological pain-specifically PN ?

If not, you are not getting the latest treatment and meds
for your specific problem(s).

All the tests for PN can be found at :
www.lizajane.com

The tingling and burning are constant, both feet. Stabbing comes in the right, especially at night.

I have not seen a neuro yet - my internist is running more blood work today in an effort to see what is behind this. I am on methadone for neck pain which cuts the stabbing in the feet somewhat and my doc added neurontin today.

I live in a small community in Florida but am thinking of going to either Shands Jacksonville (connected with Neuropathy Institute) or Mayo Clinic Jacksonville for testing.

Swmnupstrm,
I have been on methadone and Lyrica going on 2 years now and it is the best combination I have taken for pain control after trying a lot of other medications. How much and how often do you take Methadone. I take 10mg twice a day along with 100mg of Lyrica. In a way your lucky you are taking the best choices that exist.
Lanny

Thanks for the input. I am on methadone 10 mg, BID, same as you. The neurontin will be 300 TID as I build up.

I am terrified of weight gain. Over the past 7 years I have been on and off neurontin, lyrica, Cymbalta, Paxil, Lexapro, amitriptyline, and a bunch of other stuff I can't remember at the moment. When I started in 1998, I weighed
150. Last winter I was over 230 - and I don't eat that much. Seems like every doggone drug added a few more pounds, except the methadone :).

After dropping Paxil this summer, I lost 20 pounds - without changing diet or exercise - so I know these drugs are pound packers.

How do any of you deal with it? Live on chicken broth?

There is an active PN support group around the shands jacksonville area.....the guy who puts out their newsletter email is prcgene@aol.com

Thanks, Echoes, I appreciate that. Will try to get in touch with them.:hug:

Use your internist to see a neuro FASTER?
 

Things move faster IF your internist calls the neuro to 'fit' you in! And, you'll get a better 'looking at' first off than you would otherwise too.
The Asking is cheap, the results are much faster too? Sooner you get the 'going over' the sooner you can find out what's going on! Then learn to deal with it ALL.
I'm not a diagnostician, but I too have a number of medical issues which MAY or MAY NOT affect/effect each other. Best to start the medical 'merry-go-round' ASAP? Honestly, it COULD be something simple? [Best of all worlds] or a bit more 'complicated' [sure hope not!].
Testings can take a long time to schedule and do [tho at the time? They seem like a Tidal Wave], then wait for results! It is ALWAYS LONGER than we'd like. But, better good testing and ideally good results w/some simple answers -which is what I wish for you! :hug:'s - j

****I'm at 300 mg Lyrica; if I forget my morning pill, I pay for it by noon. The only other pain med I have is vicodin -- which doesn't always work. I've heard good stories about methadone, but I am a boomer and have heard years of stories that methadone is just as addictive as heroin... care to share your experiences?

Cowboy

The word "addictive" is often misused.

Addiction means you CRAVE the drug and want more. (mostly because of euphoric effects)

Methadone does not have substantial euphoric effects, BUT, it is the only opiate that has effects on the heart. Called long QT effects and should be used carefully, and an EKG should be run before you are given it.

I have several posts all over these boards about it.

Most of the time people can be maintained affordably and safely with it. Please search this board for "methadone" and you'll see the various warnings and how to do this safely. Some doctors do NOT know this so don't expect 100% understanding about methadone.

People can be addicted to anything, including food.

Most people with legitimate pain can be maintained properly.

Yes, Dan. But it should be done carefully, the pain interventions.

There are tolerance issues, etc. And there is a subset of people who develop chronic headache on them. That is because opiates stimulate release of inflammatory cytokines from the glial cells supporting the neurons. This is new information.
http://www.neurologyreviews.com/09mar/C1.html
This was discussed at the conference I attended. It is still new information.

I do think opiates should be reserved for last. I've delayed them for myself so far, luckily.

I wish Big Pharma would stop wasting time and money on ME-too drugs...and get cracking on safe pain relief.
I gag every time I see a new antidepressant, bladder control drug (all of them are of dubious efficacy), or statin.

As for me, I've used it about 3 years now. I think my longest stretch continuously on it has been about 3 months. After that amount of time, I was just able to quit, cold turkey, and had no side effects from it. My sis-in-law is on it and maintains she is addicted - so maybe I have never used it long enough.

How does the Lyrica work? The Neurontin seems to be doing some good, but I am so nauseated and dizzy that I spend most of my time lying flat.

Blood tests show no problems with blood sugar.

I will ask my internist to refer me to Shands.

Thanks, all

[QUOTE=Swmnupstrm;587900]
How does the Lyrica work? The Neurontin seems to be doing some good, but I am so nauseated and dizzy that I spend most of my time lying flat.



***Only been at it a couple of months. 300 mg. I had such a bad experience with my last drug that I watch very carefully, particularly mental side effects. It seems to work better than my previous drugs.

***I don't know about you, but when I read the pharmacy "warnings" on Lyrica, there are many bad things that can happen. We are faced with paid relief at a cost.

Cowboy